Questions & answers about Crohn's disease & ulcerative colitis.
ANSWER: Ileitis (Crohn's disease) and ulcerative colitis are serious inflammatory diseases of the small and large intestines. Crohn's disease may involve the lower part of the small intestine (ileum), the large intestine (colon), as well as other parts of the digestive tract. Ulcerative colitis causes ulceration of the inner lining of the colon and rectum, while Crohn's disease commonly involves all layers of intestinal wall. Both diseases may cause diarrhea, abdominal pain, rectal bleeding, and fever Decreased appetite and weight loss are common. The disease may begin slowly or develop quite suddenly, and can produce a range of symptoms, which affect the whole body. Ulcerative proctitis is a milder form of ulcerative colitis, which is confined to the rectum.
Both Crohn's disease and ulcerative colitis are chronic diseases. We do not know their causes. Some people have mild symptoms; others have severe and disabling symptoms. Medications currently available decrease inflammation but do not provide a cure. Because the symptoms and complications of Crohn's disease and ulcerative colitis are so similar, the two diseases are grouped together as inflammatory bowel disease (IBD).
2. QUESTION: Do the terms Crohn's disease, ileitis, and regional enteritis mean the same thing?
ANSWER: Ileitis means inflammation of the ileum, the lower third of the small intestine. In 1932, when Dr. Burrill B. Crohn and his colleagues first identified ileitis as a disease, they called it regional ileitis. "Regional" simply meant that the disease was not continuous in the ileum, but that there were areas of healthy bowel interspersed with areas of disease. The term regional enteritis was later used to describe this inflammation wherever it appears in the small intestine.
We now know that this disease can affect the colon, too--a condition also known as granulomatous colitis. (Granulomas are microscopic lesions often found in the intestinal walls of patients with this disease, but not with ulcerative colitis.) To lessen the confusion, the name Crohn's disease can be used to describe the disease wherever it appears in the body (ileum, colon, rectum, anus, stomach, duodenum, mouth, etc.).
3. QUESTION: Are ulcerative colitis and spastic colitis" the same disease?
ANSWER: No. "Spastic colitis" is a term incorrectly used to describe a disorder of bowel motility call irritable bowel syndrome (IBS). Irritable bowel syndrome does not cause inflammation and bears no relationship to ulcerative colitis or Crohn's disease.
4. QUESTION: How common is inflammatory bowel disease (IBD)?
ANSWER: it is estimated that there may be as many as 2,000,000 Americans with IBD. Males and females appear to be affected equally. While Crohn's disease and ulcerative colitis afflict people of all ages, they are primarily diseases of the young. Most cases of IBD are diagnosed before the age of 30. There may be at least 200,000 children under the age of 16 who suffer from Crohn's disease or ulcerative colitis. (Recognizing this problem, CCFA has published two special brochures dealing with IBD in young patients: one for children and teenagers and one for their parents.)
5. QUESTION: What are the early symptoms of ulcerative colitis and Crohn's disease?
ANSWER: The first symptoms of ulcerative colitis are a progressive loosening of the stool, which is usually bloody, crampy abdominal pain, and severe urgency to move the bowels. Diarrhea may develop slowly or begin quite suddenly. In addition, there may be pains in the joints and skin lesions.
In Crohn's disease, abdominal pain and diarrhea are often the earliest signs. Pain is felt in the area of the navel or on the right side, and often follows a meal. Joint pains, lack of appetite, weight loss, and fever are also common. Other early signs of Crohn's disease are a variety of sores in the anal area, including skin tabs mimicking hemorrhoids, fissures (cracks), fistulas (abnormal openings from bowel to skin surface near the anus), and abscesses.
6. QUESTION: What tests are used to diagnose these diseases?
ANSWER: There is no single test to identify either Crohn's disease or ulcerative colitis. In addition to a thorough medical history and physical examination, patients must generally undergo barium x-rays of the upper and lower gastrointestinal tract, as well as sigmoidoscopy and sometimes colonoscopy. These last two tests permit direct examination of the colon through a lighted tube inserted through the anus. Laboratory tests may also be helpful in establishing a diagnosis. Since Crohn's disease often mimics other conditions, and since symptoms may vary widely, correct diagnosis of this disease may take some time.
7. QUESTION: What causes Crohn's disease and ulcerative colitis?
ANSWER: Researchers do not know what causes these diseases. They do not believe these diseases are caused by emotional stress or by food, nor are they transmitted directly from person to person.
Research has shown that in IBD the body's defenses are operating against some substances in the body, perhaps in the digestive tract, which they recognize as foreign. These foreign substances (antigens) may themselves cause the inflammation, or they may stimulate the body's defenses to produce an inflammation.
A major thrust of CCFA-sponsored research has been carried out in the fields of immunology, the study of the body's immune defense system, and microbiology, the study of microscopic organisms with the power to cause disease. Many scientists now believe that the interaction of an outside agent (such as a virus or bacterium) with the body's immune system may trigger the disease, or that such an agent may cause damage to the intestinal wall, initiating or accelerating the disease process.
8. QUESTION: Is IBD inherited?
ANSWER: We know that Crohn's disease and ulcerative colitis tend to run in families. Studies have shown that about 15 to 20 percent of patients may have a close relative with one of the diseases. But there does not seem to be any clear-cut pattern to this familial clustering, and no researcher has yet been able to link these diseases with specific genes which would govern their transmission. Since there is no way to predict which, if any, family members will develop IBD, the diseases are not considered "genetic."
9. QUESTION: Can emotional stress trigger attacks of IBD?
ANSWER: Because body and mind are so closely interrelated, emotional stress can influence the course of Crohn's disease, ulcerative colitis, or any other illness. Although acute emotional problems occasionally precede the onset or recurrence of IBD, this sequence does not imply cause and effect.
It is much more likely that emotional distress sometimes felt by people with IBD is a reaction to the painful and embarrassing symptoms caused by the disease itself. This means that persons with IBD should receive understanding and emotional support from their families and from their physicians to help them cope with these difficult illnesses. Some patients are helped considerably by a therapist knowledgeable about inflammatory bowel disease or about chronic illness in general.
10. QUESTION: What medications are used to treat these diseases?
ANSWER: The principal drugs used to treat both Crohn's disease and ulcerative colitis are sulfasalazine and corticosteroids (prednisone, hydrocortisone, etc.), both of which reduce inflammation. Sulfasalazine, a combination of a sulfa drug and an aspirin-like compound, is used to treat mild to moderate symptoms of both diseases, and to attempt to prevent recurrence of symptoms once remission has been established. Corticosteroids are given (either by mouth or by injection) when symptoms are more severe, and are then tapered slowly and discontinued when symptoms improve. Corticosteroids are also available in a variety of rectal preparations including enema, suppository, and topical foam, all of which may be helpful in treating inflammation of the rectum. Occasionally, ACTH is used in injection form to stimulate the adrenal glands to release corticosteroids.
Other medications include azathioprine and 6-mercaptopurine (6-MP), immunosupressive drugs which have been successful in reducing symptoms, closing fistulae, and reducing or eliminating the dependence on corticosteroids in some patients. (See Glossary.) Metronidazole has been helpful in the treatment of perianal complications in Crohn's disease. Antibiotics have also been used for local infections.
Mesalamine, available in both enema and suppository form, has been shown to be effective in some IBD patients.
11. QUESTION: Do these medications have any side effects?
ANSWER: All medications may have some side effects. Sulfasalazine may cause nausea, headache, dizziness, anemia or other blood disorders, and skin rashes. Some but not all of these effects can be lessened when the drug is given first in small doses, then increased steadily to the recommended daily dose. The physician should monitor the patient closely and watch for the occurrence of any of these side effects, and decide whether the drug should be continued, reduced, or discontinued altogether
Prednisone may cause rounding of the face (facial "mooning"), acne, increased appetite, weight gain, and increased body hair. Less commonly, there may be thinning of the bones, peptic ulcer, diabetes, hypertension, and significant personality changes. Side effects such as these usually diminish as the dose is reduced, and disappear when the medication is discontinued. Patients on prolonged steroid therapy should see an eye doctor regularly because of the possibility that cataracts or glaucoma might develop. In most cases, prednisone can be administered safely with close supervision by the physician, and serious side effects are not as threatening as they may sound. Prednisone remains a valuable drug in the treatment of IBD.
The long-term side effects of azathioprine, 6-mercaptopurine, and metronidazole are less well known because these drugs have not been used in IBD patients for very long. Azathioprine and 6-MP may cause nausea, a decrease in white blood cells (leukopenia), and inflammation of the pancreas (pancreatitis). Metronidazole may cause nausea, headache, abdominal discomfort, darkening of the urine, a metallic taste in the mouth, and tingling in the hands and feet. These drugs have been known to cause occasional tumors in laboratory animals, but at doses much higher than those used in man.
12. QUESTION: Does surgery cure Crohn's disease or ulcerative colitis?
ANSWER: Surgery becomes necessary in Crohn's disease when medication can no longer control the symptoms, or when there is an intestinal obstruction or other complication. In most cases, the diseased segment of bowel is removed and the two ends of healthy bowel are joined together This is called resection and anastomosis. While this surgery may allow many symptom-free years, it is not considered a cure for Crohn's disease because the disease frequently recurs at or near the site of anastomosis.
For ulcerative colitis, surgical removal of the entire colon and rectum (proctocolectomy) is a permanent cure. After surgery, an artificial opening must be created in the abdominal wall, to which the ileum is attached. This is called an ileostomy The liquid bowel waste then empties into a bag appliance attached over the new opening (stoma) with a special adhesive.
An ileostomy may also be required when surgery is performed for Crohn's disease of the colon, if the rectum is diseased and cannot be utilized for an anastomosis.
13. QUESTION: If surgery is necessary for ulcerative colitis, is an ileostomy always performed?
ANSWER: Some newer operations have been developed in which a special pouch of ileum is created inside the body to collect waste. These operations make the wearing of a bag appliance unnecessary. One of these new procedures is the continent ileostomy in which a pouch is fashioned out of ileum inside the wall of the lower abdomen. The pouch is then emptied regularly, through its nipple valve using a small tube. In the ileoanal anastomosis the rectum is retained, the innermost mucosal layer is stripped off, and a pouch made from ileum is attached directly to the rectum just above the anus. This enables the patient to evacuate normally, preserving the use of the rectal muscles. Unfortunately, neither of these operations can be used successfully in Crohn's disease because of the possibility of recurrence of disease in the ileal pouch.
14. QUESTION: Is diet important in Crohn's disease and ulcerative colitis?
ANSWER: Good nutrition is essential in any chronic disease, but especially in these illnesses which are characterized by reduced appetite, poor absorption, and diarrhea, all of which rob the body of fluids, nutrients, vitamins and minerals. Restoration of proper nutrition is a vital part of the medical management of IBD.
While foods play no role in causing the diseases, soft, bland foods may cause less discomfort than spicy or high-fiber foods when the disease is active. Except for restricting milk in lactose intolerant patients, most gastroenterologists try to be flexible in planning the diets of their IBD patients. CCFA's brochure on diet and nutrition covers this subject in detail.
15. QUESTION: Can people with IBD develop cancer?
ANSWER: To begin with, cancer of the colon and rectum is increasingly common in the general population. Studies have shown that persons with ulcerative colitis involving the whole colon for at least 8 to 10 years are at a significantly greater risk of developing cancers. Persons with ulcerative proctitis, however, do not appear to bear any increased risk of cancer Although studies of persons with Crohn's disease of the colon are not as numerous or complete, many researchers believe that the risk of cancer in these patients is substantially less than in ulcerative colitis, but greater than in the general population. For both ulcerative colitis and Crohn's disease, the risk of cancer appears to be associated with long-term disease involving the whole colon.
Cancer of the small intestine is extremely rare in the general population. People with longstanding Crohn's disease of the small intestine carry a higher risk of developing this cancer. Even so, the number of these cancers is extremely small when compared to cases of cancer of the colon and rectum.
16. QUESTION: What can be done to discover cancer of the colon in its early curable stages?
ANSWER: Even if disease is inactive, a barium enema and/or colonoscopy should be performed at regular intervals in patients with longstanding disease, generally every year or two. During colonoscopy, small pieces of tissue should be removed (biopsy) for examination by a pathologist. The procedure will help detect microscopic changes in cell structure thought to be premalignant (epithelial dysplasia). If severe epithelial dysplasia is seen, there is a strong enough possibility that cancer of the colon has already developed or may develop somewhere in the colon, that many physicians recommend proctocolectomy.
17. QUESTION: Is it possible to lead a normal life with IBD?
ANSWER: While they are serious chronic diseases, Crohn's disease and ulcerative colitis are not considered fatal illnesses. Most people with IBD continue to lead useful and productive lives, even though they may be hospitalized from time to time, and may need to take medications. In between exacerbations of disease, many feel quite well and are relatively free of symptoms.
Even though there is no medical cure for these diseases at this time, research and educational programs funded by CCFA have already improved the health and quality of life of people with inflammatory bowel disease. Through CCFA's continuing research efforts, much more will be learned and a cure will be found.
A Glossary of IBD Terms
abscess--a localized collection of pus which may form in the abdominal cavity or in the rectal area in persons with Crohn's disease.
anemia--lower than normal amounts of hemoglobin in the red cells of the blood.
ankylosing spondylitis--a chronic inflammatory disease of the spine and adjacent joints which is seen in some persons with Crohn's disease or ulcerative colitis. The disease overwhelmingly affects males, usually before age 30, and causes pain and stiffness in the joints of the spine, hips, neck, jaw and rib cage. Occasionally, joints of the spine may become fused (ankylosis). Anti-inflammatory drugs, physical therapy and, occasionally, surgery are used in treatment.
arthralgia--pains in the joints, frequently experienced by persons with IBD.
arthritis--inflammation of a joint, accompanied by pain, swelling, heat, or redness. In some cases there are structural changes.
azathioprine--an immunosuppressive drug sometimes used in the treatment of Crohn's disease which has not responded to other medications. This drug has been shown to be helpful in reducing or eliminating the dependence on corticosteroids in some patients. This drug is used occasionally in ulcerative colitis.
barium enema--an x-ray examination of the colon and rectum after liquid barium has been infused through the rectum.
biopsy--a small piece of tissue taken from the body for examination under the microscope. A biopsy is taken by a special instrument attached to the endoscope during examination of the rectum, colon, stomach, etc. A biopsy is used to confirm the diagnosis of Crohn's disease or ulcerative colitis, or to check periodically for the possibility of cancer.
borborygmi--characteristic rumbling sounds in the bowel caused by the passage of air through the intestine.
breath tests--simple, painless tests which help detect lactose intolerance (absence of the enzyme needed to digest milk sugar) or bacterial overgrowth in the intestine.
bypass operation--a surgical re-routing of intestine so that intestinal contents bypass a diseased segment. Once the operation of choice in Crohn's disease, the bypass has been largely replaced by surgical resection of the diseased bowel. See also resection.
cholestyramine--a drug, taken by mouth, which helps to bind excessive amounts of bile acids in the intestine. These bile acids sometimes cause increased diarrhea in persons with Crohn's disease, especially after the removal of a portion of the terminal ileum.
clubbing--an abnormal shaping of the fingernails in some patients with Crohn's disease or ulcerative colitis.
colectomy--surgical removal of the colon. See also proctocolectomy.
colonoscopy--a test in which a flexible, lighted tube is inserted through the rectum to examine the colon. Biopsies may be taken as part of this test. Sedatives are usually given to make this procedure more tolerable.
continent ileostomy--the surgical creation of an ileal pouch inside the lower abdomen to collect waste after colectomy for ulcerative colitis. No bag appliance is required, and the pouch is emptied regularly with a small tube inserted through a nipple opening in the lower front part of the abdomen.
cortisone--an anti-inflammatory drug, part of a group of drugs known as glucocorticosteroids. Cortisone is used to reduce inflammation in Crohn's disease and ulcerative colitis, and may be taken by mouth in tablet form, intravenously, or through the rectum in enema, suppository or foam preparations
distention--an uncomfortable swelling feeling in the abdomen often caused by excessive amounts of gas and fluid in the intestine. Distention may be a sign of intestinal obstruction.
dysplasia--alterations in the cells of the colon seen under the microscope after biopsies have been performed. Severe dysplasia in IBD indicates that cancer cells may begin growing in the colon, and that surgery may be necessary.
edema--accumulation of excessive amounts of fluid in the tissues, resulting in swelling.
elemental diet--a specially prepared liquid meal without residue containing all necessary nutrients. These preparations are used to help IBD patients gain weight and to rest the bowel.
endoscopy--a general term for the examination through a lighted tube of any natural body opening. Types of endoscopy include gastroscopy, sigmoidoscopy and colonoscopy.
erythema nodosum--red swellings occasionally seen on the lower legs during flareups of Crohn's disease and ulcerative colitis. These lesions are an indication that disease is active, and they usually subside without a trace when the disease is treated.
exacerbation--an aggravation of symptoms or an increase in the activity of disease; a relapse.
febrile--running a fever The presence of fever in a patient with IBD is an indication of increased disease activity.
fecal fat test--a three-day measurement of the amount of fat in the stool (steatorrhea). Increased amounts of fat in the stool may indicate poor absorption in the small intestine.
fissure--a crack in the skin, usually in the area of the anus in Crohn's disease.
fistula--an abnormal channel occurring between two loops of intestine, or between the intestine and another structure such as the bladder, vagina or skin. Fistulae (pl.) are more common in Crohn's disease than in ulcerative colitis.
flatulence--the passage of large amounts of gas through the rectum.
folic acid--one of the vitamins responsible for the maintence of red blood cells. Folic acid deficiency may occur in IBD patients, especially in those taking sulfasalazine, and can be corrected by taking oral supplements of the vitamin.
gastroenterologist--a physician specially trained in the diagnosis and treatment of patients with gastrointestinal disease. Your local medical society can provide a list of gastroenterologists.
granulomas--microscopic abnormalities characteristic of Crohn's disease.
gut--another word for intestine or bowel. heartburn--a painful, burning sensation of the esophagus, usually felt in the chest. hemorrhoids--painful, dilated veins of the lower rectum and anus, seen as a complication in persons with IBD. hyperalimentation--a means of supplying patients with additional nutritional support by mouth so that their nutritional requirements are met. ileoanal anastomosis--a newer operation for ulcerative colitis in which the rectal tube is retained after colectomy. The innermost mucosal layer of the rectum is stripped off, and a pouch is made from ileum and attached directly above the anus. This preserves continence, and allows the patient to evacuate in the normal manner through the anus. This operation is also known as the "pull-through" or Parks operation. ileostomy--the diversion of fecal waste through a surgically created opening of the ileum to the body wall. Waste collects in a bag appliance attached to the skin by special adhesive. Imuran--see azathioprine incontinence--in IBD, the inability to retain feces, usually because of rectal inflammation. irritable bowel syndrome (IBS)--altered motility of the small and large intestine, causing diarrhea and abdominal discomfort. IBS is mistakenly called "spastic" colitis, though it does not cause inflammation of the colon and has no relationship to ulcerative colitis. IVP--intravenous pyelogram, an x-ray examination of the kidneys, ureters, and bladder, obtained after intravenous injection of a dye. lactase deficiency/lactose intolerance--decrease or absence of the enzyme lactase which enables the small intestine to digest lactose (milk sugar). People with lactose intolerance experience diarrhea, abdominal discomfort, and gas after ingesting milk or milk products. lactose tolerance test--a test involving the drinking of a liquid rich in milk sugar. Blood samples are then taken over a period of time to determine whether there is a deficiency in lactase. leukocytosis--an increased number of white blood cells in circulation. mesalamine--a 5-aminosalicylic acid (5-ASA) drug, relatively nontoxic and well tolerated, used in an enema and suppository preparation to treat inflamed intestine. metronidazole--an anti biotic which may be helpful in treating fistulae in some patients with Crohn's disease. mucus--a whitish substance produced by the intestine which may be found in the stool. nasogastric tube--a thin, flexible tube passed through the nose or mouth into the stomach. The NG tube is necessary to aspirate fluids and air which collect in the stomach when the bowel is obstructed or after intestinal surgery. obstruction--a blockage of the small or large intestine preventing the normal passage of intestinal contents. In Crohn's disease, obstruction may be caused by narrowing or spasm of the intestine. Signs of obstruction are vomiting, abdominal pain and distention of the abdomen. occult blood--non-visible blood in the stool, often an indication of disease activity There are simple laboratory tests which can determine the presence of occult blood. perforation--an abnormal opening in the bowel wall which causes intestinal contents to enter the normally sterile abdominal cavity perianal--the area around the anal opening which often becomes inflamed and irritated in persons with IBD. peritonitis--a complication of intestinal perforation which results in the inflammation of the abdominal cavity covering (peritoneum) prednisone--a form of cortisone given in tablet form to reduce the inflammation of Crohn's disease or ulcerative colitis proctocolectomy--surgical removal of the entire colon and rectum Purinethol--see 6-mercaptopurine pyoderma gangrenosum--a type of sore which sometimes occurs on the extremities of persons with ulcerative colitis or Crohn's disease remission--a lessening of symptoms and a return to good health resection--surgical removal of a diseased portion of intestine. Reattachment of the two ends of healthy bowel is called anastomosis Rowasa--see mesalamine. sigmoidoscopy--a test in which a lighted tube is passed through the rectum into the sigmoid colon. Biopsies may be taken through the sigmoidoscope. Sedation is not usually needed. 6-mercaptopurine (6-MP)--an immunosuppressive drug found to be useful in closing fistulae and in reducing or eliminating dependence on corticosteroids in some patients with Crohn's disease. 6-MP is also used in some cases of ulcerative colitis. [SMA.sub.12]--a laboratory test which allows for the measurement of 12 blood chemistries from a single blood sample steatorrhea--abnormally large amounts of fat in the stool, usually the result of poor absorption in the small intestine in Crohn's disease sulfasalazine--a medication combining a sulfa component with a drug in the aspirin family. Sulfasalazine is used in mild to moderate attacks of IBD and to maintain a remission. The drug is thought to be more effective when disease is in the colon rather than the ileum. tenesmus--a persistent urge to empty the bowel, usually caused by inflammation of the rectum total parenteral nutrition (TPN)--the intravenous infusion of all nutrients through a catheter placed in a large vein near the collar bone. TPN is used to insure adequate nutrition in severely ill or malnourished IBD patients, to rest the bowel, and to prepare poorly nourished patients for surgery toxic megacolon--acute dilation of the colon in ulcerative colitis (or occasionally in Crohn's disease), which may lead to perforation upper G.I. series--an x-ray examination of the esophagus, stomach and duodenum performed in the fasting patient after the ingestion of liquid barium. The duration of the examination can be prolonged to allow for visualization of the entire small intestine, including the terminal ileum The x-ray is then known as an upper G.I. series with small bowel follow-through The Crohn's & Colitis Foundation of America, Inc. is a nonprofit, research-oriented organization dedicated to finding the cause of, and cure for, Crohn's disease (ileitis) and ulcerative colitis. The Foundation is committed to a nationwide coordinated research program aimed at conquering these chronic and devasting intestinal diseases, which continue to baffle medical science. These important research efforts are supported solely by contributions from the public.
The Foundation has lay and medical members who pay nominal yearly dues and receive current research progress reports and notices of CCFA educational meetings. Chapters are located in various states. For further information, please call or write:
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|Title Annotation:||includes glossary of inflammatory bowel disease terms|
|Publication:||Pamphlet by: The Crohn's & Colitis Foundation of America (CCFA)|
|Date:||May 1, 1993|
|Next Article:||A Guide For Children & Teenagers to Crohn's Disease & Ulcerative Colitis.|